Rainy Schlosser

Rainy Schlosser, SYNGAP1 Mom to Hope, discusses her 4-year-old daughter’s journey in life and across the US for 3 studies!

Show Notes

Rainy Schlosser is in the middle of a 7,500 mile drive-a-thon to participate in 3 studies to help find a cure for SYNGAP1. She talks with Ashley about the studies, her daughter Hope’s incredibly difficult medical journey, what makes Hope happiest, an EEG with Curious George, and the wonderful connections they are making along the way! This is a fundraiser, so please check out ⁠Syngap.Fund/Hope4theCure⁠!

All episodes are available at ⁠⁠⁠⁠⁠⁠⁠Syngap.Fund/Stories⁠⁠⁠⁠⁠⁠⁠.

⁠⁠Hope’s Warrior Story⁠⁠⁠

⁠My SYNGAP1 Drive-a-thon, Hope4theCure⁠

Connect with Rainy & Hope:

Other Links

Connect with ⁠⁠⁠⁠⁠⁠Ashley⁠⁠⁠⁠⁠⁠:

SRF & SYNGAP1 Info:⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

⁠⁠⁠⁠⁠Pre-register⁠⁠⁠⁠⁠ for SYNGAP1 Conference 2024

Connect with SRF (@curesyngap1):

Family Zoom Meeting (Weekly on Wednesdays, 8PM ET)

Sibling Zoom Meeting (Monthly on 1st Thursday, 8PM ET)

Comments: ⁠⁠⁠⁠⁠⁠⁠ed@curesyngap1.org⁠⁠⁠⁠⁠⁠⁠

Music: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠In the Forest… by Lesfm from Pixabay ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

Episode 028 SYNGAP1 Stories, April 11, 2024

#SYNGAP1StoriesHope #Syngap #SYNGAP1 #SYNGAP1Stories #SYNGAP1StoriesEp28 #Epilepsy #EpilepsyAwareness #Autism #AutismAwareness #IntellectualDisability #ID #Anxiety #Behavior #RareDisease #RareDiseaseResearch #SynGAPResearchFund #CareAboutRare #Advocacy #PatientAdvocacy #Neurology #GeneticTesting #Family #Water #Music #SyngapConf #SYNGAP1Siblings #Caregiver #Elopement #Behavior #Communication #Hope4theCure #Driveathon